Ehlers Danlos Society

I'm raising money in aid of THE EHLERS-DANLOS SOCIETY (based in the US but is a worldwide charity)and every donation will help. I will be doing an ice bath everyday for 31 days. I will also be spreading awareness through my social media pages with daily updates. Thank you in advance for your contribution to this cause that means so much to me

May is Ehlers Danlos awareness month, I was diagnosed with hEDS (hypermobile Ehlers Danlos syndrome) earlier this year after years of mis diagnoses, extravagant treatments and life changing symptoms.

What will the funds be used for?

Every cent raised during this campaign will be donated directly to The Ehlers Danlos Society who’s aim is to CARE :

Care - Providing life changing support services.

Access - Reducing barriers to care and shortening the diagnostic journey for people with Ehlers-Danlos syndromes.

Research - Ensuring a consistent pipeline of groundbreaking research.

Education - Educating and mentoring all healthcare professionals and individuals impacted by all types of EDS and HSD.

My Story.

My earliest recollection of symptoms of EDS are when I was just 5 years old. I suffered severe pain in my ankles and my mam was told by the children’s hospital I just had “overly bendy ligaments” and I should “grow out of it”.

At 15 I started to get headaches and 12years later I still get those same headaches and just as often as when I was a teenager. (Nothing has/can relieve them)

I was also told I had IBS at 15 years old.

At 19 years old the neck and back pain started but were only prevalent after standing or walking for long periods.

At 24 things started to go downhill and fast! Widespread pain every second of everyday, that’s what I’ve been living with the past 3 years. Not to mention the countless other symptoms I have to live with. (I was told I had this pain because of emotional trauma)

Fast forward to 2025, I’m now 27years old and finally got a diagnosis.

The last 3 years for me have been absolute hell, having to fight to be listened to by healthcare professionals, having multiple surgical procedures (just to see if they helped), endless medications and experimental treatments. All of which could have been avoided had I been diagnosed earlier.

When I finally got my diagnosis I had mixed emotions. I was relieved that I finally had answers. I was sad that the diagnosis happened to be a disease with no known cure. I was angry that I had so many years of my life wasted with misdiagnoses. I was skeptical that this may well be another misdiagnosis.

I am currently still in the grieving process, I am grieving for the old me, the me with little to no symptoms. I am grieving for a life I know I will never be able to have.

Thanks to The Ehlers Danlos Society I have access to support, information and endless advice. I am so grateful to them and I hope I can raise awareness and funds to keep them doing what they do best - trying to ensure people with EDS avoid what I’ve been through and what most people with EDS go through in order to get a diagnosis. I personally have had at least 15 needless surgeries/procedures/experimental treatments.

Thank you to anyone who has took the time to read this, share or donate. You are making a difference in so many lives.

#togetherwedazzle

As many of you know, for the last few years I have tried to run to raise funds for worthy causes. This year that cause is very personal to me and my family.

In 2021, our daughter Aedan was diagnosed with Ehlers-Danlos Syndrome (EDS). The diagnosis finally put a name on a collection of issues, seemingly unrelated, that she had been suffering with for years, but could never be explained and were essentially dismissed by the doctors. So what is EDS? It’s actually a group of 13 related disorders caused by different genetic defects in collagen, an essential building block. EDS weakens the body’s connective tissues — which normally provide strength and flexibility — either because the collagen isn’t as strong as it should be or there’s not enough of it in the skin, muscles, skeleton and blood vessels. For those like my daughter, that results in loose joints throughout her body that can make something as simple as holding a pen or walking difficult and results in chronic pain making even attending a full day of school in person a non-starter right now. To complicate matters, for most EDS patients, including Aedan, EDS is accompanied by other conditions including POTS (heart issue) and Mast Cell Activation Syndrome (where the body essentially attacks itself) amongst others. Right now there is no cure for EDS. The best that can be done is to manage the symptoms and pain.

Relatively speaking, we are still in the early days of EDS research and the education of doctors and other service providers who treat EDS patients. Finding specialists who understand EDS (or even know what it is) is one of the biggest challenges we and other EDS patients face right now. A few places, like the Mayo Clinic and Tulane Medical School, have started specialty clinics for EDS, but appointments are quite literally years (not days or even months) out and day-to-day resources for EDS patients are difficult to find. EDS patients rely on social media and other word of mouth from other families to help point others to doctors in their region of the country who might be able to help.

So much more is needed to understand this disease and potentially someday find a cure. To help with that, this year I am running the Goofy Challenge (full marathon + half marathon or 39.3 miles) again to raise money for the Ehlers-Danlos Society. This is a direct fundraiser by me with 100% of your donations going to the Ehlers-Danlos Society (I pay for all of the costs associated with registration, travel, etc.).

The Ehlers-Danlos Society is a global community of patients, caregivers, healthcare professionals & supporters dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders & related conditions. They support collaborative research & education initiatives, awareness campaigns, advocacy, community-building & care for the EDS & HSD population. Their goals are world-wide awareness & a better quality of life for all who suffer from these conditions. For more information about EDS and the Ehlers-Danlos Society, please visit www.ehlers-danlos.com

On behalf of myself, Aedan, the rest of my family and all EDS patients, thank you for considering a donation to this worthy cause.

Want to join me in making a difference? I'm raising money to benefit Ehlers Danlos Society, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me. EDS is part of my daily life and I would like to help bring awareness to this little known disease.

More information about Ehlers Danlos Society: The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals & supporters dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders & related conditions. We support collaborative research & education initiatives, awareness campaigns, advocacy, community-building & care for the EDS & HSD population. Our goals are world-wide awareness & a better quality of life for all who suffer from these conditions.